If you want to find a story of courage, then you should definitely read Chasing Miracles by John F. Crowley. In it, he talks about his family’s tumultous journey with their children, two of which have a form of Muscular Dystrophy known as Pompe disease. These beautiful children, Megan and Patrick, are an inspiration.

The book is divided into three parts: strength, hope, and joy. Chapter two is what helped me come up with the title of this blog, because the family’s motto is “Never, never, never quit.”

Their story focuses on determination, faith, hope, love, and a desire to not only help their kids survive their challenges, but to help them thrive as well. This family is not unique in their determination to help their kids – they are just your “average” American family. It’s their stories, and the wonderful way in which they way they are told, that makes them unique. This is also, at the same time, what makes them inspirational–not only those who have children with special challenges, but also to those who don’t.

What would you do if your kids were medically fragile and could die? Would you do everything in your power to save them, knowing at the same time that their condition could not be permanently reversed? In the Crowley case, they were surprised when some of the effects of Pompe were in fact reversed, namely, Megan and Patrick’s enlarged hearts. But some of the symptoms, sadly, remain.

What is most amazing is that in the midst of this, the kids have an unstoppable, bright spirit of determination that is infectious. Here is one important thing to remember: Pompe does not affect mental ability in any way, making those who have it intelligent people who can dream anything for themselves as far as a career goes.

Lisa Cypers Kamen

Lisa Cypers Kamen is a filmmaker, positive psychology coach, author, host of Harvesting Happiness Talk Radio, professor and lecturer specializing in the field of sustainable happiness. She is widely recognized as an expert on the subject. Lisa’s acclaimed documentary film co-produced with her now fifteen year-old daughter, Kayla, “H-Factor…Where is your heart?” explores how people in varied circumstances find, generate and share happiness. In addition to her film on happiness, Lisa has also published a number of articles and books entitled, Got Happiness Now?, Are We Happy Yet?, Leadership: Helping Others to Succeed and Reintegration Strategies, about combat trauma and using positive psychology principles to create wellness in a post-war new normal. Lisa’s written work is featured on blogs for the Huffington Post, PositivelyPositive.com and InspireMeToday.com and she is a TEDx community event speaker. In addition, she is the Happiness Expert for the Florida Department of Citrus/ Florida Orange Juice in its Take on the Day campaign.
Harvesting Happiness for Heroes™ is a 501(c)(3) nonprofit corporation that delivers stigma-free integrated combat trauma recovery services to warriors and their loved ones. Modalities include scientifically proven strengths based Positive Psychology coaching and interdisciplinary tools such as film, yoga, meditation, art and creative writing designed to mindfully empower the client to achieve increased self-mastery, self-esteem and reclaim her/his life. HH4Heroes focuses on the balance of mind, body and emotion resulting in greater overall wellbeing and the transformation of Post-Traumatic Stress (PTS) into Post-Traumatic Growth (PTG). HH4Heroes offers retreat workshops, one-on-one coaching, Battle Buddy programs, as well as our new R.E.B.O.O.T Online virtual community coaching classrooms designed to reach underserved areas. In addition, HH4Heroes deploys Return to Duty™ civilian and corporate training to help welcome a warrior home and into the community and workplace.
Lisa is committed to teaching Happiness is an inside job™ and helping others end their needless suffering through intentionally cultivating greater joy.

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My husband says, “You don’t lose until you quit trying.” None of his seven children had Muscular Dystrophy, but he’s coped with his share of challenging situations. Thanks for sharing this wise advice.

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